Former pro football player Steve Gleason helped to inspire the Answer ALS project, and Microsoft’s focus on the neurological disease. Photo by Lucien Knuteson.

Several years ago, former football player Steve Gleason came to Microsoft with a challenge: develop technology to ease the effects of amyotrophic lateral sclerosis (ALS), a progressive neurological disease that was robbing him of his ability to move his wheelchair and play with his son.

The company responded with technology that allowed him to move his wheelchair and communicate using a keyboard by moving his eyes.

Now, Answer ALS — a project that also originated from a Gleason effort — is looking beyond technology as an aid, harnessing the power of big data in the hopes of better understanding the disease and ultimately developing treatments. They’re in the midst of a five-year project to gather 6 billion data points each from 1,000 people with ALS. Thursday morning, Microsoft announced it will contribute to the groundbreaking effort with a $1 million donation in cloud computing and technical services to help researchers access that vast data.

“It is an amazingly ambitious project,” said Elizabeth Bruce, Microsoft’s university relations director. “There’s been a lot of promise about how big data can change almost every field – this is using big data for good and saving lives.”

A Path to Treatment

In the United States, about 5600 people are diagnosed annually with ALS, a disease that kills the neurons that control the body’s voluntary muscles. There is no known cause or family history in more than 90 percent of cases.

The project’s hope is that the comprehensive data set will allow researchers to eventually differentiate distinct subtypes of ALS, paving the way for personalized treatments, and ultimately cures.

The six billion data points per person represent everything from their DNA to their daily habits. That vast trove of open-source data will be hosted on the cloud with the idea that global experts in machine learning, artificial intelligence and data informatics can mine it for patterns and clues.

“It’s a virtual biopsy of the brain,” said Dr. Jeffrey Rothstein, a professor of neurology at Johns Hopkins University and the founder and director of the Answer ALS program, called the project “the biggest endeavor” the neurological field has seen.

The dataset is attractive to researchers worldwide not only for its quantity but because they can use the information without having to recruit patients for clinical trials, speeding up the process by up to ten times, he estimated.

Microsoft Joins the Effort

The data will be stored in Microsoft Azure, which ensures patient privacy. Microsoft will also be working with scientists to figure out the best way to manage and host the data in the cloud. The more accessible the data to researchers, the more likely they are to use it, Microsoft’s Bruce said.

Supporters of the ALS effort say it’s on the forefront of a growing intersection between big data and health. The National Institutes of Health, for example, has implemented a pilot program to build and store research data on a cloud in the hopes of accelerating biomedical discoveries.

“It’s a bit of a frontier and a question: Is it going to lead to a cure?” Bruce said. “It’s the scale of our ability to analyze this in new ways that’s exciting.”

The timing of the Microsoft’s announcement comes just before Friday’s Answer ALS Game Changer Gala, which will be held at the Sheraton Seattle Hotel. Seattle seemed a prime choice for the fundraising gala because of the Gleason connection as well as local corporate partners such as Microsoft and Boeing, and supporters like Pearl Jam’s Mike McCready, said Clare Durrett of Answer ALS.

So far, Answer ALS has raised $32 million with $8 million still needed to reach their project goal, she said. Of the 1,000 patients needed for the project, the group has already identified 929.

Kellie Schmitt is a Seattle-based health journalist. A longtime reporter, she is a frequent contributor to USC’s Center for Health Journalism, where she completed a health journalism fellowship. She has been a staff writer at the Bakersfield Californian and the San Jose Mercury News, and reported from Shanghai for CNN Travel, The Economist’s Business China and the China Economic Review.

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